Tuesday, March 24, 2009

Frustrated

My father-in-law is constantly asking me how I am doing it (juggling everything with Grace being in the hospital and the frequent ups and downs she has been experiencing these last few weeks) I always respond by telling him that I just do, I have no other choice. But today at the hospital I just don't know anymore, coming up to the hospital I have always been able to comfort Gracie, I have always been able to make her smile and help her feel comforted and lately all she wants is to be left alone and to be in her swing. I know that she is still sick and just had a central line placed through her groin, but this is still so so hard. I feel like she doesn't need me any more, that it doesn't matter any more whether I come or not. The nurse today said that she thinks that her swing is her safe place because nothing bad ever happens in it, but my arms use to be that safe place and I feel like now she just fights it when I hold her...I always thought that the thing about Grace that was the best is that she wasn't like so many of the other heart babies that hate to be held, but perhaps being in the hospital this time around she has developed that nasty characteristic.

I know I'm probably over reacting but it sure is hard, I just want my baby back, I want her eyes to light up the moment she sees me and a big smile to cross her lips. I want her to want me to hold her and comfort her and cry because I put her down, not because I am holding her. I just want Gracie to come home and to be allowed to care for her again.

From a medical stand point Grace is doing ok, no fevers since yesterday and her CRP levels dropped from 17 to 5.5 overnight. Though the doctors say she seems to be acting better, I'm not buying it (besides they are only in the room for 5-10 minutes) she is sleeping so much, not really smiling and has no desire to play. I just have to remember that we are moving in baby steps---Gracie baby steps.

9 comments:

I am sorry Deanna. I was thinking last night that you and I are going through such separate struggles, but yet the struggles are both our personal Hell, and how different that Hell can be. We are PRAYING that Gracie can get better and COME HOME!!! She needs to be with her family, and have you being her caretaker every day-in-and-out. We love you guys.Mike and Em

Gracie may be sleeping a lot and no desire to play etc because its her way of escape. We saw that a lot with our son. Its their way of having ICU psycosis. At the hospital they don't have the chance to have a routine, and get the adequate rest they need so this is how they deal with it. As you get home you will see Gracie come around and not want out of your arms.

Take your time with Gracie, encourage everyone that they are not to do anything to Gracie when she is in your arms. Whether that is taking her temp, her blood pressure etc. The team to get involved in this is the social worker at the hospital and child life. They will help you advocate for her. She may need a change of scenery as well. A stroll if she is stable and can be put on monitors that will allow it. They did this for us when we were there long term and had 9 IV pumps, c-pap, oxygen and many other things to drag around with us. So it can be done they just don't like to do it as its WORK....

You are doing a FABULOUS job stay strong... Praying everyday that Gracie is fever free and ready to come home soon.

I am so sorry Deanna! I am sure you are beyond frustrated. If you feel like things aren't quite right, continue to insist they look further. Mother knows best. Maybe Gracie is just hurting and being touched just aggravates that. I don't know. I can't imagine how difficult that must be for you! Your family is in my thoughts and prayers. I love you!

I forgot to mention...of course Gracie needs you! Of course she wants you there. She is just as frustrated if not more frustrated than you are! She wants to be home. She wants to be with her momma and daddy and her big sister. She just doesn't know how to express her frustrations and pain. Be patient with her. She is just doing the best she can. But never doubt that she needs you! There is no doubt in my mind that the thing that gives that little girl the will to live, is her wonderful supportive family. She feels your love even if she can't express it! And she needs you now more than ever! Hold on Deanna! The trying times will pass! I love you!

I think you have every right to be very frustrated with how things are going. . but the good part of this is even though it's uncomfortable for all of you, she continues to fight and that is a blessing even if it not at the desired speed. She is amazing and I know without a doubt she wants her mommy and so do not give it another thought that she doesn't. She needs to see you and you do make a difference to her. I am praying that she will come home soon so then you can get back into a routine as that can be very important in the road to recovery.I am sorry that it's so hard.(HUGS)

Ehhh . . . that's a tough feeling to deal with. I've read about quite a few heart moms who express this same helpless feeling, but it does seem that the babies eventually come out of it.

I don't know why I thought of this as I read your post, but where Gracie is spending so much time in her swing - and it sounds like, frustrated and perhaps bored of the same-old-same-old - I was wondering if you have ever had her watch the Baby Einstein DVDs. NOT "Little Einsteins," but the original series that was made for babies - you can get the boxed set at Costco, or individual DVDs at other stores.

The series really is AMAZING, and my baby has laughed herself silly over them since the time she was about 6 months old (she still does, and she's almost 3).

They have classical music throughout, so they are also calming, but then the series teaches tons of educational things - like shapes and animals and such. And the puppets (who are the primary cast) are really funny for babies.

I don't know how they did it, but Baby Einsteins is definitely genius material. I highly recommend the sign language DVDs they have. It's crazy how early babies pick up on it - long before they can really talk - and it makes things much easier for a mom when you're wondering why your baby is crying. She will likely tell you: there's a sign for "hurt" and "hungry" and "milk" and "blanket" - lots of useful stuff. And the babies use the signs a lot if you reinforce them - and if you always pair the sign with the actual word, they'll start using the word early too.

Anyway, I just thought I'd mention the DVDs as a way to keep Gracie entertained and give her something to keep her mind off of being locked up in a hospital. Poor thing.

I am so sorry. I can say that I understand the frusteration of being the mom and not being able to fix your baby. Mommys are supposed to beable to fix everything, but we just can't fix these little heart kiddos. At times I started to feel like I wasn't even k's mommy. There came a point with Kaidence that they wouldn't even let me change her diaper because she was too fragile and some days I never had a minute alone. I finaly asked the nurse one day if she could just leave the room and give me a few minutes alone with my daughter. It is frusterating and scary to feel like your role as "the mommy" is being taken away and not needed. I felt like every time I had anything to do with her it was because she was being tortured. When we came home we had to do shots and learn how to use the suction machine and feeding tubes. I hated it because I felt like I was the mean one. I am happy to tell you that Kaidence's has forgiven and forgotten. Your little sweet heart will do the same with you. Hang in there. Truth is that you being there does make a difference to her. Your feelings are normal. Try to keep your chin up and let me know if you want a visit. We will be in cardiology thursday.

I am so sorry for the pain and heartache that you are feeling. This post just broke my heart to think of what you are going through. Gracie is so blessed to have a mommy so full of love and care. When love is magnified, heartache is magnified. I pray that Grace's will let you know how much she loves and needs you amdist being in the hospital and not feeling well.